Immune & Autoimmune Diseases

When Lupus Happens To You

In today's celebrity culture, it's all too common to compare yourself to the glitterati... but that cuts both ways when you have an autoimmune disease.

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The first time I’d ever heard of lupus was during the second season of America’s Next Top Model.

America’s Next Top Model contestant Mercedes Scelba-Shorte has lupus.

It was the earlier days of reality television, so the show was still working on finding its legs when it came to typecasting for ratings. You know—the single mother who misses her child, the tough girl from the streets just trying to make it, the mean girl battling her own insecurity, all battling it out for the title of “top model” and a contract with a modeling agency that could make it true.

So when contestant Mercedes Yvette Scelba-Shorte was given the token sob story on an episode as she revealed her lupus diagnosis, it felt like a weird and unusual angle.

To be honest, I don’t even remember how it came up—just that I felt confused on so many levels. What is lupus? I thought, making a mental note to look it up (sometime). Skeptically, I wondered: How could someone that looks so well claim to be so sick? After all, they offered no additional information, no discussion about its long-term effects.

In this vacuum, I asked cynically, is she even really that ill? Or is she just being used as a show pony?

Back then, the tears shed over this unheard of illness seemed to me like a cheap, sensationalist ratings trick.

Invisible illnesses are cloaked in skepticism and shame.

There’s just no way to help a well person understand what it’s like to ache from the insides of your bones or the center of your joints. In the Chinese language Fuzhouhua, there’s a word for it—which I suspect stems from the higher occurrence of lupus and its symptoms in those of Chinese, as well as African, Hispanic, and Caribbean descent—but not in English. It literally means a sore aching from the marrow of your bones out.

Lack of language aside, it’s hard to talk about a disease others can’t see and you yourself don’t always feel. People tend to disbelieve discomfort they cannot see, and since no one has a gauge installed that can tell you if your threshold for pain is lower than average, their doubt makes you doubt yourself. Rather than be viewed as a complainer, or as someone who is using their illness as an excuse, you push through the pain, and try to pretend there’s nothing wrong.

It’s hard to talk about a disease others can’t see and you yourself don’t always feel.

Even if you are able to bring yourself to share your diagnosis, there’s always that bated-breath moment: how will they react? Perhaps they simply won’t, offering nothing but a blank stare … in which case, it’s now up to you to educate them about lupus. Or maybe they’ll brush it off dismissively, a reaction that hurts even more. Another possibility: the person you tell about your lupus reacts with drama and tears, in which case, you’re the one comforting someone about your own disease.

There are no good outcomes. And so, with options this poor, we stay not only invisible, but silent.

I knew Seal best as the singer of “Kiss From a Rose” … and the husband to supermodel Heidi Klum.

As a shallow teenager belting it out in the shower (“My power, my pleasure, my pain … babyyyyy”) I never gave too much thought to the lyrics, and certainly not enough to analyze what they referred to. But I did give fleeting thought to Seal’s appearance, enough to question his union to one of the most objectively lovely women on Earth.

Seal and then-wife Heidi Klum. Seal’s distinctive facial scars are the result of lupus.

Klum was—and still is—a legend in the fashion industry, the gold standard of sublime aestheticism. And Seal is … well, scarred. Damaged. His lumpy, scaly face frightened me. While thumbing through glossy tabloids, I would avert my eyes to his gorgeous then-wife rather than look closely at his disfigurement, and as I did so, I would wonder at the inequality of their pairing. How did he score her with a face like that?

Then I’d turn the page, never thinking for a second longer about just why Seal’s face looked the way it did.

Years later, I learned it was because of discoid lupus erythematosus.

I couldn’t understand why I was getting so many strange rashes.

The first time it happened was at a Long Island beach right before prom; I’d wanted to get a tan that’d make my silver dress shine brighter. The second was years later, on a cruise to the Caribbean. It surfaced again in Hawaii after just a single beach day, and once more in Los Cabos on a group trip. After this, I swore off traveling and decided I just didn’t like beaches.

I blamed sand fleas, jellyfish stings, and sunscreen. During my 12-city trip to China, I blamed the oozing blisters on my hands and feet on the  pollutants in the water.

Eventually, I saw water as the only common factor in all of these reactions, and became convinced I was allergic to something mysterious found in foreign bodies of it. And because the rashes were getting progressively worse and my dermatologist, unable to see them at their blistering height, attributed it to generalized eczema, I sought an allergist to help me pinpoint exactly what that unknown factor was.

“Actually, I think you may just be photosensitive, especially in hot climates … but let’s just test you for lupus, in case,” he said. He quickly added, reassuringly: “I doubt you have it, though; you have so few of the red flags.”

When the test came back positive, he was still confident that it was a false one. “It happens all the time.”

I put it out of my mind.

When Selena Gomez canceled 12 tour dates in 2013 after a holiday “concert meltdown,” many people assumed it was either because of her breakup with Justin Bieber or that the wholesome star had fallen prey to substance abuse. After Britney Spears’s legendary breakdown and Lindsay Lohan’s much-publicized exploits, many were also quick to speculate that she was cracking up under the pressures of fame.

In a person so young and vibrant, taking time off to “focus on herself” sounds like a PR cop-out. In celebrity-speak, “me-time” means post-breakup sulking; “taking care of one’s health” has become a nice way to say “rehab.” So can you fault the judging public for assuming the worst?

Pop sensation Selena Gomez has lupus.

Of course, “the worst” is also another matter of context. After years of build-up, the rumor mill forced Gomez to out the real cause of her anxiety, fatigue, and depression: systemic lupus erythematosus.

In December 2015, nearly two years later, she finally opened up about it to Billboard, going on the record stating, “I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about. I could’ve had a stroke … I wanted so badly to say, ‘You guys have no idea. You’re assholes.’”

I cried when my rheumatologist confirmed that my allergist’s false positive was, in fact, not false at all.

Typically tough on myself and on others, tears always seemed like a luxury I couldn’t afford. But on that spring day, I let the grief wash over me as I sat in my car and mourned.

I had spent the previous few years reclaiming my health and body, losing 40 pounds and discovering an addiction to endorphins. I was doing power yoga in 100-degree studios, kickboxing on heavy bags, running miles for the feel of the wind in my face, and swinging around kettlebells like nobody’s business. I was leaner, stronger, and more able-bodied than I’d ever been in my life, and goddamnit, I was proud of myself.

But with this diagnosis, this lifestyle might be one I’d have to give up. Muscle inflammation, joint pain, and stiffness are the biggest harbingers of a lupus flare, and can come on suddenly. I’d read stories that chilled me to my aching bones of sufferers who, overnight, found themselves unable to get themselves out of bed anymore. Permanently.

And I, Su-Jit Lin, have lupus too!

What’s more, with this diagnosis, my whole career had an expiration date, too. As a writer, I need dexterity in my fingers and in my mind. But headaches, dizziness, brain fog, and difficulty expressing thoughts can also be part of a flare. And so I wept for the eventual limitations that would take away the things I loved to do—the things that made me me.

I researched prednisone, the most commonly prescribed medication for controlling lupus inflammation, and was devastated to see that weight gain was one of the biggest ones. By accepting medication, I would be undoing all of the progress I had made losing weight over the last few years … and that was without the extreme fatigue, weakness, and insomnia that would now be conspiring to keep me from the gym.

I shed tears for my vanity. Unlike some women, I’d always loved my hair, with its unusually wavy body and healthy gleam of rich, blue-black tones. Now I had to resign myself to saying good-bye to it; it had already started sporadically falling out in clumps.

Lupus is a terrorist. Everything’s a target. All is fair game.

I’d been blessed with clear skin, as well. Should the dreaded mala rash spread its wings across my cheeks, was I to bid that farewell, too?

Yet in many ways, these are the smallest symptoms.

While no one really knows what causes it, the simple explanation of systemic lupus erythematosus is that your body basically starts attacking itself. Called “The Great Imitator,” its weapons are wild cards, and the war it wages is a guerilla one.

So without warning, one day, my kidneys could suddenly become inflamed to the point that they stop functioning. Same with my heart, which is now more vulnerable to cardiac arrest and arterial disease. Thanks to lupus, I have an increased risk of stroke, bleeding, and blood clotting, as well as a greater susceptibility to cancer, infections of all kinds, and bone tissue death.

Lupus is a terrorist. Everything’s a target. All is fair game.

Legendary writer Flannery O’Connor died of complications from lupus at the age of 39 in 1964. Howie D of the Backstreet Boys lost his sister to the disease at age 38. Both 32 at the time of their passing, actress Inday Ba and hip-hop producer James “J. Dilla” Yancy fell victims to lupus, too. So did journalist Charles Kuralt in 1997, and Ray Walston in 2001.

Paula Abdul’s career was nearly destroyed as her lupus- and reflex sympathetic dystrophy-spurred erratic behavior made her a walking joke. Nick Cannon, like MLB player Tim Raines, experienced kidney failure, plus life-threatening clots in his lungs from lupus nephritis. Toni Braxton has also been hospitalized for undetailed complications. Meanwhile, Kristen Johnson and Maurissa Tancharoen both had to put their careers on hold to undergo chemotherapy to treat their lupus.

And yet, our living stars all continue to persevere as the internal, intangible battle between mind and matter wages on.

Some days, they’re inspiring and a message of hope. Other days, they’re frustrating as they perpetuate the impression that it’s just not that big a deal.

It’s impossible to tell which feeling is right.

I had meant to write this as an empowerment piece. After all, it’s been five years since my diagnosis, and—thanks to both my foundation of healthy, active living and strength of will to power through pain—I’ve yet to require a regular regimen of medication.

Sure, I still lose fistfuls of hair to hot showers and still get mottled red rashes from a single day on the beach. Yes, I deal with random inflammation in my joints and soft tissue, otherwise unexplainable infections, and straight days of radiating headaches. And I’m sometimes sidelined by a fatigue so deep that even typing feels like lifting bricks under gray skies of sadness, my brain draped in a fog of confusion and frustration. “Nevertheless, she persisted.”

Sometimes I’m sidelined by a fatigue so deep that even typing feels like lifting bricks under gray skies of sadness…

But being able to stay medication-free? Well, that’s only because I’m lucky. So far, lupus hasn’t reared its head in its ugliest form yet, which is why that story of empowerment can’t be told at this time … because that story isn’t over. As a hibernating disease that flares up in a temper when woken, anything can still happen.

However, what’s done with is my ignorance about it. The insensitive perspective I once held. The “out of sight, out of mind” approach I, like so many others, have when it comes to invisible illnesses. All of that is no more.

What’s gone is the crying, the grieving. Instead, I thank my joints every day for allowing me to get out of bed and love my muscles for everything they can still do. I cherish my brain on the days my thoughts flow effortlessly, and marvel at the fingers that can put them on paper.

So although lupus is a self-destructive disease, the first part of myself it took down was my apathy: the ability to choose not see this ghost of a malady when so many highly visible people already had it. Because when it happens to you … well, that changes things, now doesn’t it?

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